I don't have epilepsy but I'm on antiseize drugs

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I don't have epilepsy but I'm on antiseize drugs

by AussieMarg on Tue Jun 05, 2018 12:02 AM

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Hi All, 

On the 08/08/2014 I was diagnosed with Anaplastic oligodrendroglioma Stage 3 brain cancer  I underwent emergency surgery just two weeks later. I had complications and wasn't eventually given 1G of Keppra which only took two hours to stop the horrendous seizures that I had for five days straight with no let up. Because of the severe side effects of the antiseize drug Keppra and Lamatrigine both diseases have been gradually reduced over the last four years. The neurologist told me last Friday that I could go off Keppra because even though I was on the highest dose it was ruining my life.... Severe and very painful cramps as well as ongoing diarrhoea. These two side effects were the worst out of eighteen side effects. I was told to take twice the Lamatrigine dose putting it up to 50mg twice daily. I did as instructed and the side effects came back ... As my brain cancer has been very stable for nearly two years and I do not have epilepsy I can figure out why I need to take antiseize drugs when I haven't had any major seizure since early September 2014. 

I have had a four hour EEG to rule out epilepsy as I had been having what my neurologist called Dissociative Attacks  All that happens is that my right hand sometimes shakes when I'm trying to go to sleep. These have gone away every time my drugs were reduced and came back a year or so later. I haven't had any kind of seizure not even a very very mild one since I underwent fifteen double doses of radiation treatment which finished in the first week of February 2015. Before I was finally diagnosed with brain cancer I had six or seven major seizures lasting for thirty minutes each and then a biggie that was an hour of duration. I was in shock with that one after I had climbed into bed and pulled my feather doona up... After about five minutes I felt that I was encased in a massive block of ice ? So I just lay there without panicking and hoped I would wake up in the morning. I went through everything alone except for a very frightened cat who wouldn't leave my side. 

I have survived a lot on my own as my sons all live a long way away. I went through being diognised with a brain tumour but thankfully my youngest son was with me when I was finally diagnosed with brain cancer. Then he had to go back to the Navy so I went through my brain surgery, the recovery and the radiation treatment by myself. I've survived all that on my own and as my brain cancer is stable with no sign of retuning since just after the surgery then I don't see why I have to continue taking these drugs that are ruining my life. 

So I putting it out there for discussion. 

Take care everyone 

Aussie Marg. 

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